This is a place where I can post family updates and ramble about things as I try to find my way since the recent death of my daughter. Life has completely changed for my sons, my husband and myself. Our faith has been a great source of comfort and we'll continue to rely on it as we press forward.

The Story of Christmas & Silly Socks

Saturday, September 18, 2010

Nancy Taylor Jensen doesn't know what to post. Jess is pale, frail and thin. Her heart beat will be extremely irregular going from tachycardia to bradycardia then will even out and be normal for awhile. She is always thirsty but throws up if we give her very much to drink. We're still giving her the anti-nausea suppositories and "anti...-lotion" (it's anti-nausea lotion but she calls it the anti-lotion. lol).

Her skin is getting almost transparent in some places, especially her wrists where we are supposed to apply the anti-nausea lotion. We give her ice chips and only sips of soda every 45 minutes or so otherwise she is throwing it all up. We... have to be careful not to give her too much ice chips too.

We are giving her more lorazapam to help her be more calm - even if it means making her sleep more (per hospice's advice). It's no fun being thirsty and not being able to drink anything. Poor kid was even hungry awhile ago and wanted to eat something. I can't feed her when I know it's going to hurt her so much by making her throw up. I just want this to be over for her. She asks for her DSI but opens it and is too weak to hold it up... then she falls asleep... that was even before we were giving her the lorazapam.

A dear friend of ours came over a couple of days ago and brought Jessica some beads and a coloring book - she knew full well that Jess would probably never use them but she wanted to give Jessica a gift anyway. I've given Jessica a couple of coloring books and colored pencils lately knowing that she won't use them. I've had a habit over the years of buying crafty things on sale (or when I can find them) and putting them away for when Jessica is feeling "down" or going through a procedure or going to the hospital. I have some nice things still put away .... good thing I have nieces that live nearby that have birthdays, right? ;)

We are still hanging in there. I mean, what else do ya do? Still giving and getting a bunch of hugs and kisses every day. When Jessica told us her good-byes on Saturday thinking she wouldn't be here on Sunday, she said something about thinking that she was going to make it to the 20th (my birthday). I told her (on Saturday) that she didn't need to hold on and wait until my birthday - that we had celebrated my birthday early so that she didn't need to hang on and get sicker and sicker. Well, the thought came to me yesterday that she may still be thinking that she could still hang on until the 20th. I don't want her to die on my birthday if she can help it. So last night I told her again that we had celebrated my birthday and that she doesn't need to try to hang on until the 20th. And then I told her that it would be sad for me if she died on my birthday. Then she asked what day Aunt Karen's birthday is. (my sister - the mom of Marcus) It's on the 19th. I told her that neither of us would want her to TRY to die on our birthdays... but if that's the day that the Lord wants her to go to heaven then that's ok. Then I started talking about how I can just imagine the joy on her face when she enters God's light of love and sees everyone who is there waiting for her. I actually saw a smile on her face. Then we went down a list of everyone that she knows either in person or online who is there waiting for her. Of course Marcus was at the top of the list. My cousin Martin, Zoe, Sydney, Julee, Bethany, Jason, Tommy, Paige... and the list continued. (sorry if I forgot someone here). We also talked about her great-grandparents on both sides of her family. And this is just the beginning of who is there waiting to love her.

Jessica keeps ringing the bell we gave her. (curse that bell! lol) She feels hungry and can hear her brothers getting up and getting ready for school - which includes pouring their cereal. She hasn't felt hungry in weeks except occasionally. I'm trying to figure out what to do for her. I'm going to go and sit in her room and feed her ice chips... and hope and pray she doesn't throw that up.

Please keep the prayers coming. We can feel them. We just need help getting over these rough spots. Thank you all so much!

Wednesday, September 15 (night)

Jess had a relatively uneventful day. Still saying that she is hungry and thirsty (mainly thirsty) so we give her a little soda and ice chips. She's so funny - she insisted that she have her lap-table, notebook and pencil. She kept falling asleep while holding her pencil in place on the notebook paper. All she was able to do was make the dots where she put place the pencil and then fall asleep. Oh, no, she's not stubborn, is she? ;-) Poor girl. I sure wish she could do some of the things she enjoys doing. But at least she is resting....... and that sounds so good to me right about now! I'm headed to bed at 2:30am - - - soooo much better than 8:30 yesterday morning!

The hospice nurse came by and Jessica's O2 was around 80%, heart rate was 96 - 105 but her left lung has even more fluid in it than on Tues (the day before). I just checked her pulse-ox and the o2 is 75% and heart rate was 88-97. Still not bad for her at all. But I did hear trigenemy - where every third heartbeat is a PVC but that didn't last. She is going in and out of it all the time. Amazingly enough she hasn't complained about the arrhythmia like she did ... 3 years ago... no, 4 years ago when she was hospitalized for it. At least it's not bugging her.

She gave me hugs and kisses for all of you! :)

Thursday, September 16

Jessica is quite miserable today. She has a low grade temp and is experiencing a bit more pain. She has been sleeping more so she is taking in less fluids. I pray she is relieved of her misery soon. Thank you all for your prayers, messages and love.

Thursday, September 16 (late night)

Jessica's fever went down after I gave her Tylenol and didn't go back up. She's had a mostly restful day waking for soda, ice chips and meds. (The only ones we're giving orally are for anxiety and congestion and are given sublingually). Jess has said several times that she doesn't feel well. Of course I push the morphine bolus button and stick around to see if she will throw up. I think I'm doing the right thing by making her wait 30 minutes between soda breaks. She can have a little water and ice chips in the meantime if she... feels thirsty. She hasn't thrown up in 3 days now so that's a huge victory on our part! Her heart rate and O2 sats were "normal" for her (I have to qualify "normal since it is relative. lol But she's stable tonight.

She might be getting some skin breakdown so I'm going to call the hospice nurse and see about getting egg crate foam to help prevent it.

Oh, and for those of you who were wondering, I fired the infusion nurse. I didn't get her fired from her job, I just made sure that she doesn't come out here again. I hated to do it but the hospice nurse said that it needed to be done so SHE called the infusion company. yay! I didn't have to be the bad guy 'cuz I hate that - but on the other hand, it's my job to make sure that my daughter is as comfortable as possible and she sure doesn't need to go though getting her port change twice every time the nurse does it. It's not just the needle poke either, it's taking the tape off the old site that is very irritating. Poor kiddo. But, as always, she's a champion! The infusion nurse won't be out until Mon or Tues. I requested Tues so hopefully that'll be when they come.

Jessica about knocked me over when the Disney channel was advertising a new show that is going to air in a week and Jess said, "I'll probably be dead by then". *gasp!* I didn't even notice what was on tv since I was changing her at the time (and most likely administering the anti-nausea suppository - and yes, that's how she got the tylenol - she's such a trooper!). I told her that she will be able to watch anything she wants any time she wants in heaven. She then asked me if she would be able to watch scary movies. huh? I never thought she would even want to watch scary movies but I keep telling her that there's no fear in heaven - that there's nothing to be afraid of so I guess she got to thinking that she won't be too scared to watch scary movies. LOL The aide who was here said, (before I could) that she didn't think there would even be scary movies in heaven. I agreed. But I reiterated that there will be a lot of fun things to do in heaven. Later in the evening that same ad came on the Disney channel and Jessica, again, said, "I'll probably be dead by then." What do I say? So I just asked her if that was the commercial that was on earlier when she had said that and she said yes. I asked her if she was interested in watching that new show anyway and she said, "not really." I wonder what the big deal was and her feeling the need to tell me that she won't be around to see it? And she said it so bluntly - but that's Miss Jess. Blunt. When she was little she would say, "Something smells stinks" if I happened to have bad breath and she smelled it. haha! It was last Saturday that she told us all good bye and told both Brandon and Austin "I might die tonight". She seemed disappointed that she was still around Sunday when she woke up.

My sister's birthday is on Sunday and my birthday is on Monday. I've told Jess several times not to wait for my birthday to go to heaven and that I would be sad if she died on my birthday or Aunt Karen's birthday - unless that's when the Lord wants her to go. I'm going to try not to worry about it. In my book I already celebrated my birthday. I'm also trying to think of Jessica's impending death as a birth of sorts into the Spirit world - one more step towards her eternal progression. I don't kid myself - I know I will miss her - desperately at times - but love her enough to want what is best for her and living like this isn't living. She has also been in so much pain for so long... I know in my heart that she will be so much happier in heaven and I tell her that often.

I'm going to try to get some sleep since she has dozed off. She gave me hugs and kisses for all of you so *muah!*

Friday September 17Nancy Taylor Jensen was up with Jess most of the night. I went to bed good and tired and instead of going to sleep started to cry. Danggit. I did finally go to sleep and slept like a rock. I'm still very tired and emotional. I love my "baby girl" and am going to miss so much.

Jessica is sleeping and waking only occasionally. Her pulse-ox is normal (for her) - O2 is 76 and heart rate is 80ish. The thing that Karl and I have noticed is that we've been able to see her pulse in her neck throbbing no matter what her heart rate is. Now it's barely noticeable as if her heart isn't beating as strong. The hospice nurse said that it's possible that her heart is getting tired of beating so hard for the past week (while it's been in tachycardia). I agreed and said that her heart has had to work hard her whole life due to the defects. So it could be soon. very soon. I know we've said it before and it's almost as if we expect her to pull out of it because she always does... but I know that even if she hangs on for several more days it will be difficult ones unless she is able to just sleep through it.

We've had such wonderful people from church bringing in food every 3rd day and people from Karl's work calling or coming by. Some people understand better than others. We try to be patient with those who do not understand. We've always been in a unique situation with Jess and her CHDs, strokes, having to learn to sit up, walk and talk twice. The fear of sending her off into heart surgery 5 times not knowing whether she would make it out ok or paralyzed and blind or even alive. Having to keep her home during the cold/flu season or she would be sick and fighting for her life whether in the hospital or at home. Having to keep her in a stroller until she was too big for it in order for her to be capable of maneuvering a motorized wheelchair because she couldn't walk and breathe at the same time. (She has no direct connection between her heart and lungs. The pulmonary arteries only go from lung to lung and only branch off to 1/3 of each lung. The lungs get blood through teeny tiny blood vessels called collaterals which all clamp down when her heart rate goes up. So when she walks all the blood vessels, including the pulmonary artery, clamp down and prevent blood flow to the lungs when they are supposed to open up and allow more blood flow to the lungs in order to provide the body with much needed oxygen while exercising.) One thing that Karl has done and loves to do, is when we've taken Jess to a store - say Walmart - and people are staring at Jess as she steps out of her wheelchair to reach for something.. Karl will exclaim very loudly, "WOW! It's a MIRACLE! She can stand!" LOL People will look away embarrassed. Jessica says, "Oh Daddy!" I love it. Kinda serves people right for staring. lol

So we are used to being unique. different. odd. weird. and fun-loving. This is not fun though. I already miss my "baby girl". She hasn't been able to just be her fun-loving-self in a very long time. She has truly tried and I admire her determination to be happy even when in extreme pain... and even while dying. Recently when Karl and I were telling her that she needs to go to the light when it comes and I was wiping away my tears and told her that I just wanted her to be happy, she said, "But I AM happy! I have a family who loves me!" WOW. She's my super-hero indeed. But now it's time for her to be able to truly be happy - to be free from the pain and many other medical problems that have held her back from doing so many fun things. She has been happy - and has made many people happy. But she has no idea how truly happy she will be when she is "born" into heaven and is whole.

Today is one of my emotional days but that's ok. Like Jessica says, "sometimes the tears just have to come out. Love to all.

Tuesday, September 14, 2010

Jess is sitting propped up in her bed, dozing off and waking to have ice chips and sips of soda. She visits with us for a few minutes and dozes off again. I am still sneaking in all the kisses I can - and she will lift her arms and hug me. She's so amazing.

Jessica's heart rate has come down and is in the normal range again. Although that seems like a good thing, the hospice nurse said that she thinks that Jessica's heart rate will continue to slow all the way down to 0 - probably within the n...ext day or so. She could slip into a coma and that would actually be the most peaceful way for her to go. But then again, we are talking about Jessica and the thing she does the best is surprise and amaze us! ;-) I mean, it's been 43 days since she's had anything sold it eat. We never thought she could go that long! Jesus fasted for 40 days - who knew that Jess would take that as a challenge? lol Of course Jess cheated and has had soda. hehe... it's a sense of humor that has also helped us through all the years and all the challenges.

We cherish each moment, each hug, each kiss and each word. It's so amazing to have an angel right here in my home and in my heart. We are ready and so is she... but on the other hand she is comfortable and resting right now so we're just going to take it one moment at a time and one day at a time... just like we have been.

Thank you all for your love and support.

Today's post:

She is throwing up again and has a fever of 101. Her heart is in and out of tachycardia. She is still trying it be very pleasant and polite. I think I would be pretty grouchy by now. Doing two suppositories at a time, one for fever, one for nausea.

Monday, September 13, 2010

Nancy Taylor Jensenis having a really rough day. Jess keeps vomiting and even fell. She called for Daddy and then got out of bed and fell. He heard the crash and went running only to see her trying to pick herself up off the floor and everything on her bedside table had been knocked off. Then came the dry heaves.

Karl woke me up every time she threw up so I could give her a suppository. He is giving her the anti-nausea lotion every 4 hours as well and nothing is working. I called the hospice nurse and she came out and gave Jess a shot of promethazine. The hospice doctor said that it usually stops the nausea long enough for the other meds to be able to take effect and be absorbed better. She brought several doses in case Jess needs more injections over the weekend. The shot also makes her sleepy so she is resting. I'm going to take a nap - I'm so exhausted. Fortunately we have an aide coming this evening. Thank you all for your good thoughts and prayers.

ps: Jessica had been throwing round the clock every 3 - 4 hours even with us administering 2 anti-nausea medications.

(later that night)

Jess has been entertaining us all night. She is dreaming a lot and talking in her sleep, raising her arms up as if she were drawing or cooking. lol She threw up again at about 3:30am. She's also having a lot of muscle spasms and jerking. Could be the meds. She isn't resting very well with all the spasms and wild dreams.

9-10-10

Jess has had a very difficult 1 1/2 days. She has been confused, dreaming crazy things, crying out for help and her speech has been slurred. Sometimes it's been cute to see her reaching out as if beading a string or even hearing her singing but she hasn't been able to just sleep.

When she was awake she was crying because she can't eat anything or do anything that she used to. Sometimes she seems to be meeting people and at one time she thought that her bunny that died, Mary, was right next to her. I understand that those things usually happen right before a person passes, and I don't mind any of that... it's when she cries out and has a bad dream that I breaks my heart. I'm sitting in her room now on my laptop so I can be here in case she cries out or needs me. Just now she was telling someone, "this is my family" and seemed to be showing someone a picture of her family. And then mumbled some things... then she asked which way to go, "This way or that way?"... and then she tried to sit up. She woke up and I asked her if she had seen the light and she said no. She asked me if she was going to go to the hospital and I said no. I asked her if she wanted to go to the hospital and she shook her head no and so I again told her not to worry that she will stay right here until it's time to go to heaven.

I can't leave her because she just calls me back every two minutes. I'm letting Karl sleep and I'll have my turn to sleep later. I hope this phase, even if it is her last, ends soon. I hate seeing her in mental agony and not being able to rest.

Ps:she also kept crying out with arms and legs whaling about, once she started hitting her own stomach and another time her chest when she coughed.She kept hallucinating and it was just awful.We couldn’t leave her for a moment for fear that she would do something to hurt herself or fall out of bed.

9-11-10

Nancy Taylor Jensencan't sleep. I'm in too much pain and have tossed and turned in bed for about 2 hours. Jessica said her final good-byes last night and hung onto me and cried telling me how much she is going to miss me.

She gave me tons of kisses as I told her that I was going to miss her too but that she needs to go to heaven. She also told her brothers that she loved them and said "I might die tonight". The boys are remarkable and said some sweet things to ...her. I called Justen and he came over before going to work and his wife, Ravyn came by with her mother to visit Jess too. Several times Jessica pointed to where her cousin, Marcus, was. I know he is going to help her adjust to her new life once she passes and that he will show her around. My cousin, Martin, also died from a brain tumor when Jess was just a little girl - about 13 yrs ago - so I'm sure she doesn't remember him now but she will on the other side of the veil. Jessica will introduce Marcus and Martin to all the CHD and "Tu Nidito" children that we've known who have passed and they will become great friends.

Jessica's breathing became much more labored and she was combative at times. The Lorazapam wasn't helping so Karl called his dad to come and help give Jessica a blessing. Karl started singing hymns to her and I stood and enjoyed the father/daughter moment. Then I went into the room and we both sang hymns to her while we waited for Karl's parents to arrive. Jessica became more relaxed as we sang. It was nice to have my in-laws here and the blessing was wonderful. Throughout the evening we were able to have Jessica's aide (and my wonderful friend), Renee, here with us. I thanked Jessica for bringing Renee into my life. :) And Renee shared her thoughts and feelings with Jess while she was still coherent.

I have a feeling Jessica has slipped into a coma. She was didn't respond when I went to bed at 3am... but at least she's been resting comfortably (finally) for the past few hours. Karl is sleeping in the recliner next to her bed. I'll try to get a response again a little later when I change her and if she doesn't respond then I'll call hospice.

Sometimes I hesitate to share too much here on fb (and on my blog)... but so many of you have told me how much my posts help you - so that's why I share. Of course it helps me to write things down but if sharing can help but just one person then it's worth it. You know... I wouldn't want anyone to have to go through watching their child suffer as Jessica has throughout her 22 years and then watch them die.... but my faith has been strengthened through all this in a way it couldn't have been any other way. My beautiful, pure, innocent, precious daughter has taught me so much... it's a privileged to have been her mother for 22 yrs in this life and for all eternity to come. Jessica loves life more than anyone I know... and that says a lot considering she's suffered 2 strokes, has been blind, paralyzed, had 5 heart surgeries, hemorrhaged, is developmentally delayed, has had countless other procedures, hospitalizations and other surgeries, ETC. She IS a miracle. Even after her death she will still be a miracle. She is JOY. And I can only imagine what a joyful event it will be once she passes into the spirit world and can do all the things that she's missed out on in this life. She will DANCE, RUN, SWIM, SWING and anything else her heart desires. And it's going to be quite the celebration. There are so many people who have passed on who love her and are waiting with open arms to receive her. I wish I could get a glimpse of that event - but then I would really want to go with her and I'm needed here. My husband and sons & daughter-in-law need me and I need them.

I've rambled on long enough. Thank you all for your love and support. ♥

9-12-10

Nancy Taylor Jensenis touched by all the love and support offered here. Amazingly enough, Miss Jess was able to wake up and talk today. She is mostly sleeping but definitely not in a coma as I had thought she was earlier. Her breathing is more labored and she is getting congestion in her throat.

She is able to wake up for a few minutes at a time and then sleeps without all the hallucinations. I am convinced that she had a reaction to the injection of promethazine that was given to her two days ago for nausea. I noticed that her m...uscle jerks and spasms increased greatly after the injection and the hospice nurse looked it up and that was a side effect listed... about the hallucinations... my thoughts were that it was part of the dying process or that her brain was being affected due to her electrolytes being off but now I'm not sure since she has come out of that phase. The hospice nurse thought it was the morphine since we can't tell for sure exactly how much her body is processing or at what rates because it's in the subcutaneous tissue and with her muscle mass deteriorating so quickly... we just can't tell. Whatever the reason, I'm so glad that it's over and am praying that it doesn't happen again. What an emotionally and physically draining time for us.

I'm beyond exhausted and am going down for another nap but wanted to thank you all for your love. Karl is taking time off work to be here for Jess, me and the boys. I'm so thankful that he is my husband.

Funny story: when Karl and I were dating I received inspiration from that Lord that Karl was the one I was to marry. (I had almost married someone else 2 years prior so I had it in my mind that I was going to be REALLY SURE before talking about marriage with anyone else). Shortly after the inspiration that I received, Karl and I were talking and I don't even remember what words I said but out of my mouth came - the Lord has told me that you are the one I'm to marry so what are you going to do about it? type of message. One brief instant of me thinking that I was the biggest idiot on all the planet and Karl says, "You're right". We spent hours upon hours talking, getting to know each other - our goals in life, spiritual goals and family goals and they were exactly the same. After a whirlwind (and challenging) courtship we were married on April 19, 1985 in the LDS Mesa temple for time and all eternity. I've been married to the most amazing (and sometimes frustrating) man on earth for 25 years. hehe! I love him to pieces and he loves me with all his heart too. I tell him all the time how glad I am that I listened to the Lord and MADE him marry me. hehe He says that he is glad that he listened to the Lord too because during that small pause he felt the Spirit telling him that I was the one for him too. Good things happen when you listen to the Lord.

Just like Jessica said, "This is the life! I have a family who loves me and I love them too!" ... and I extend that to include all of you who are praying for us. This is what life is about!